I feel that it is time to let you know about my progress and activities. You can always write to me if there is something you wish to find out.
As of today, since my most recent hospitalization, I am using my fourth box of Kaftrio. I am feeling quite good. I am eating a lot of food (hereby I remind you that I have been inserted with a feeding tube, because eating is a very difficult task for me), I am physically active and joyful. Since July, I have been able to raise my body weight by 7 kilograms, which is a fantastic accomplishment, because one of the main complications of those living with cystic fibrosis is being underweight. Everything seems to be perfect … that is until I get that worrying feeling in the back of my head that my medicine supply will be running out in a couple of weeks, I still do not have the funds to purchase the next batch, and the delivery times of the medicine have already stretched out to several weeks. If only there was some sort of good solution …
The lung transplantation. It was the summer of 2020. I had just been placed in a hospital. I was feeling terrible: I had a severe bacterial infection in my body, a fever and difficulty breathing. I had been on the organ transplant list for nearly two years – and just at that moment, I received a phone call that the right lungs were available … My new chance for a higher quality life was finally within reach. At that same moment, my hopes collapsed, because my body was simply too weak to allow the operation to be carried out. All those emotions: the feeling that my only chance to live had passed; anger, disappointment, depression, wanting to just smash things against the wall … And all of that at just 27 years of age. Other 27-year-olds went to work, travelled, studied, were in a relationship or broke up, raised children – but I was sitting in the hospital all the time and hoping that I could simply be allowed to live …
Thanks to Kaftrio, my body is currently in the best shape for the lung transplantation. After this operation, I would be expecting good results. However, waiting for the transplantation is a time filled with anxiety for me, because I must be in good health. Every moment, I could be receiving a phone call that I need to get to the hospital RIGHT NOW, because there is only ca 6 hours available to perform the transplantation – and this includes the precise work of doctors.
Hereby I am asking you to at least consider becoming an organ donor, because taking a few minutes to fill out this form could mean that you will be saving someone’s life someday: https://www.elundidoonorlus.ee/tahteavaldus
Despite fearing that the medicine will run out and that the Health Insurance Fund will not be able to find funding for it after all, I will be going all the way and I will never give up, because hope dies last!
HELP ME BREATHE!
At the moment, we have taken the Health Insurance Fund to court on this matter, and the Circuit Court has granted Maarja preliminary legal protection, obliging the Health Insurance Fund to finance Maarja’s treatment until the end of the main dispute. We are currently collecting support to cover the legal costs associated with the main dispute!
We believe that the Health Insurance Fund’s refusal to finance Maarja’s medication may be in conflict with the constitution. This case is not only about Maarja; it is related to standing up for health equality and the availability of essential medicines for everyone. The court’s decision could bring much-needed clarity for similar future cases.
We need your support, primarily financial, to cover the legal costs associated with this case. Your contribution helps not only in Maarja’s fight for her right to life-saving medicines but also contributes to a broader fight for health equality.
- Väike Projekt OÜ
- Sergei Astafjev
How can you help financially?
9008810 – donate 10 euros
9008850 – donate 50 euros
Beneficiary: Naerata Ometi MTÜ
Information: Maarja toetuseks
SMS to number 13013 write Naerata maarja for donating 1,6 euros
SMS to number 13017 write Naerata maarja for donating 3,2 euros
Become our regular supporter, more info HERE